Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 19, 2022
Are you a Vet ? – Join AnCan’s new Vet’s group to help best navigate your healthcare. It’s not about your disease – it’s about getting the best care, bennies and allowances. So please invite other Vets and Care Partners – no matter gender, condtion, or where they get care. Read more at https://ancan.org/veterans/ . Next meeting Thu, Sep 22 , free, drop-in – https://www.gotomeet.me/AnswerCancer
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Mental health is much on AnCan’s mind right now. It’s highlighted this week by the anxiety suffered by an older gent. (rd)
Topics Discussed
Possible recurrence needs more skilled provider; denovo Mx w. no primary inervention requires a GU med onc; early report post testicualr surgery; short report on NY conference; PIK3CA; MSI-H makes gent a candidate for Keytruda; Gen. Joel needs a new QB; mice and purple tomatoes; treating gynacomastia but how much RT??; slow, creeping PSA gives rise to anxiety in older gent; is spinal pain cancer, asks long term, younger Mx gent?; Pluvicto only holds so what’s next – Jevtana?
Chat Log
Jeff Marchi, San Francisco (Private): 5:07 PM: my brother gene has been given Casodex 2 days before his first Lupron shot. isn’t 14 days the standard?
AnCan – rick (to Jeff Marchi, San Francisco): 5:10 PM: 10-15 days
Jeff Marchi, San Francisco (Private): 5:11 PM: thanks
Herbert Geller (to Everyone): 5:20 PM: Genitourinary Medical Oncologist They deal with prostate, bladder, etc.
Joe Gallo (to Organizer(s) Only): 5:21 PM: Should have had an MRI for a targeted rather than a standard BX.
Len Sierra (to Organizer(s) Only): 5:22 PM: True, Joe.
Pat Martin (to Everyone): 5:25 PM: Genetic testing?
Len Sierra (to Organizer(s) Only): 5:26 PM: This is unbelievable. At the UT website for GU oncology this is what they say: Our team treats the following conditions: (Hint – No mention of Prostate Cancer) Bladder Kidney Penis Testis Ureter Urethra
Herbert Geller (to Organizer(s) Only): 5:26 PM: Great!
George Rovder, Arlington VA (to Everyone): 6:36 PM: https://www.inova.org/doctors/jeanny-b-aragon-ching-md
Mike Yancey (to Organizer(s) Only): 6:44 PM: Early morning doc appointment, so gotta run. Thanks for another great call and discussion AnCan – rick (to George Rovder, Arlington VA): 6:45 PM: If I had to see a doc at Innova, it would be her. George Rovder, Arlington VA (to Everyone): 6:46 PM: Thanks Rick. Good if it’s a go with Dr. E. If not she’s local and more experienced than Joshua Allen. AnCan – rick (to George Rovder, Arlington VA): 6:46 PM: It’s always tough to switch docs within a practice. George Rovder, Arlington VA (Private): 6:47 PM: Of course. Richard Cramond – Oakton, VA (to Everyone): 7:06 PM: I have to go David Muslin (to Everyone): 7:16 PM: What about Dr. O? Julian Morales – Houston (to Everyone): 7:16 PM: Need to drop off. These discussions are only getting better!!! Ben Nathanson (to Organizer(s) Only): 7:18 PM: Sorry, must go — see you all next week Joe Gallo (to Everyone): 7:21 PM: David. 3 sessions 12Gy Mark Thompson (to Everyone): 7:38 PM: Thank you all. George Rovder, Arlington VA (to Everyone): 7:39 PM: Happy New Year. George Rovder, Arlington VA (to Everyone): 7:39 PM: Thanks to all.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 5, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Great input this week from Advisory Board Member, Richard Wassersug PhD. And right at he end – maybe a touch of African Waterways – ‘De Nile’! (rd)
Topics Discussed
Stick or twist on RT for longtime recurrent older Gent; a similar Peer Survivor comments; man with cribriform intraductal faces immediate recurrence; starting Prolia; leg pains from ADT; Theraworx; looking at IHT; steady as she goes; MSI-H man asks about Immunex test; abi added to treatment but maybe daro would work; is Clinical Trial failing or succeeding?; aggressive disease recurs on Pylarify 3yrs after Tx ends – but man asks if it’s a false positive.
Chat Log
Richard Wassersug (to Everyone): 5:18 PM: Or there were only 6 cores taken
JEFFERSON DURYEE (to Everyone): 7:00 PM: OP GU PROSTATE STUDY IGUP20133 ETRUMADENT ZIMBERELIMAB DOCETAXEL PETER JAY VAN VELDHUIZEN,MD MY CURRENT CLINICAL TRIAL TEN MONTHS THEY ADDED 3 MORE MONTHS YR OLD ORCHIECTOMY A YR A GO PSA HAS RISEN TO 7.006 TESTERONE LESS THAN 5*
Frank Fabish – Columbus OH (to Everyone): 7:04 PM: Got to go guys. Thanks for listening.
Thomas Jacobsen – CO (to Everyone): 7:05 PM: Thanks everyone. Gotta go.
Julian Morales – Houston (to Everyone): 7:07 PM: Have to drop. Another great discussion. Glad I could contribute! See you next week!
Richard Wassersug (to Everyone): 7:23 PM: Sorry all. I have to go.
Bob G. Philadelphia (to Everyone): 7:25 PM: Time for me to go. Thanks.
Ben Nathanson (to Everyone): 7:27 PM: Good night, George – good to see you again
George Rovder Arlington VA (to Everyone): 7:27 PM: Good night friends. Stay well.
JEFFERSON DURYEE (Private): 7:31 PM: TY AND GOOD NIGHT
We had a fascinating webinar on August 29th, a debate on whether transrectal biopsies or transperineal biopsies are better for prostate cancer patients.
Don’t know the difference? No problem, this webinar will give lots of food for thought, and plenty to take back to the doctor’s office with you!
Deborah Kaye, MD, Assistant Professor Duke University Division of Urology and Duke Clinical Research Institute Margolis Policy Center, argued for transrectal biopsies. Arvin George, MD, a urologic surgeon specializing in the diagnosis and management of genitourinary cancers at University of Michigan Health, argued for transperineal procedures.
We have been reading all your feedback and taking it to heart, you want more information on this topic. To quote Rick Davis- “we hear ya!!”, and we are working on it.
Watch here:
Special thanks to Janssen, Pfizer, Bayer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
We are working on slides – check back later.
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 23, 2022
AnCan’s upcoming webinar “Prostate cancer biopsies: the great debate” takes on a hot topic for anyone planning a biopsy: Should it be transrectal or transperineal? Learn what these techniques are and why the decision matters. Register at https://bit.ly/3OJ9Mmu
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Refining the fine print — making changes when you’re handed paperwork to sign (bn)
Topics Discussed
Recommending a Fox Chase doc for NJ first-timer with troubling PSMA-PET; bicyclist sees two PSA rises after radiation — time to worry?; metastasis nine years after prostatectomy, seeking a new California doc; shaken by PSA rise after salvage radiation and en route to medonc; chemo round three — “it sucks but it works” ; testicular “barrier” complicates treatment for rare metastasis to a testicle; 6 months undetectable PSA, looking forward to a holiday; recovering from infection after losing 25 pounds, and pondering a T-cell trial; fantastic Pluvicto response, hoping for additional treatments; diarrhea and fatigue coming off abi — was prednisone taper too fast?; Keytruda treatments hit roadblock after blood test; nurses look askance when he carefully reads — and modifies — a stack of paperwork before signing.
Chat Log
Bob G. Philadelphia (to Everyone): 6:01 PM: Can’t stay but wanted to let you all know about a full day virtual series of classes from Abramson Cancer Center at Penn, where I go. Titled “Focus on Prostate Cancer” Friday, October 21, 2022 7:30 am – 4:00 pm EDT Free, though they ask for a small donation. https://www.med.upenn.edu/prostate2022/agenda.html
Richie in LA (to Everyone): 6:12 PM: Have severe thunderstorms in my area right now, so if I get kicked off for loss of electricity, I will try and log back in ASAP. Thanks
Peter Kafka – MN (to Everyone): 6:14 PM: Richie: If your internet goes out you can join by phone if that doesn’t get kicked out.
Richie in LA (to Everyone): 6:14 PM: Thanks Larry Fish (to Everyone): 6:20 PM: from nadir … how often PSA rests ..how long was it rising up to now – ? why no action?
Bob McHugh (to Everyone): 6:26 PM: Dan Geynisman at Fox Chase …
Joe Gallo (to Everyone): 6:43 PM: joeg@ancan.org I am 4+5
Julian Morales – Houston (to Everyone): 6:47 PM: Genitourinary (GU): Pertaining to the genital and urinary systems.
Julian Morales – Houston (to Everyone): 6:50 PM: FYI – These meetings are archived for viewing at later times.
Jeff in CA (to Everyone): 7:23 PM: Thanks all. Have another meeting startiing now. Much appreciation for your observations and feedback.
Joe Gallo (to Everyone): 7:39 PM: The nuclear doc for PSMA I mentioned at Fox Chase Yi Li, MD, MSc.
Joe Gallo (to Everyone): 7:43 PM: better name reference Jian Q. (Michael) Yu, MD, FACNM, FRCPC Chief, Department of Diagnostic Imaging, Nuclear Medicine and PET
John Vandenberg (to Everyone): 7:44 PM: thanks – i’ll ask my primary doc next week
Ben Nathanson (to AnCan Barniskis Room): 7:49 PM: Hope surgery went well!
AnCan Barniskis Room (Private): 7:50 PM: TxBen … all good and a little advocating for myself too
Julian Morales – Houston (to Everyone): 7:58 PM: I read my mortgage papers and was accused of being a lawyer!
Pat Martin (to Everyone): 8:08 PM: How long does it take to run through your system?
Jim Ward (to Everyone): 8:11 PM: Gotta run. Congrats on the successul procedure, Rick!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 15, 2022
Check out our NEW AnCan Veterans Support Group – all conditions, all genders … with the purpose of helping Vets navigate their healthcare, benefits, and disabilties no matter their Provider! https://ancan.org/veterans/ . Next meeting Aug 26 @ 8.00 pm Eastern in the Barniskis Room. Free & drop-in.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Gynacomastia rarely gets discussed, so we put that right this week (rd)
Topics Discussed
Experience with Pluvicto; just started Keytruda/pembrolizumab; genomic testing can fall out of network without patient guidance; determining the low threshold for PSMA imaging; PSMA imaging cost; chemo may be working but considering next treatment; more Pluvicto experience; are occasional intense fevers associated with AUS?; how to deal with gynacomastia; doc misses sepsis and participant hospitalized; switching docs; holding steady; staph incfection lands another Gents in hospital; is PALB2 actionable; treating depression and anxiety; 3rd chemo session brings doc discussing what’s next; uretral stent removal delays Pluvicto start; treatment selction for older Gent with slow recurrence over many years.
Chat Log
Pat Martin (to Everyone): 8:11 PM: what is Provicto?
Paul Freda Lake Worth FL (to Everyone): 8:13 PM: Yes, what is Provicto ??
George Rovder Arlington VA (to Everyone): 8:13 PM: Above is link to Pluvicto
Pat Martin (to Everyone): 8:13 PM: Thanks
Alan Babcock (to Everyone): 5:46 PM: I am confused. My PSA is 0.21 and Dr. Wong & Dr. Geynisman fron Fox Chase said I cannot wait for radiation and ADT.
Jeff Marchi, San Francisco (to Everyone): 5:47 PM: PSA IS ONLY ONE FACTOR; how much cancer, has it spread
Alan Babcock (to Everyone): 5:50 PM: How much does a PSMA cost?
Alan Babcock (to Everyone): 6:03 PM: I must leave. Thank you for all the information.
Herb Geller (to Everyone): 6:25 PM: Nystatin
Bob G. Philadelphia (to Everyone): 6:25 PM: Nystatin powder
Herb Geller (to Everyone): 6:25 PM: Its and antifungal agent
Jimmy Greenfield (to Everyone): 6:28 PM: Thanks guys
George A Southiere Jr (to Everyone): 6:37 PM: sorry to hear Linda. Hang in there
Jeff Preston (to Everyone): 7:02 PM: Thanks to all tonight, great to be with you.
George A Southiere Jr (to Everyone): 7:03 PM: Goodnight all! good seeing you all
John Antonucci–CT (to Everyone): 7:07 PM: There’s a PALB2 website/interest group. https://palb2.org. Mostly breast Ca
Julian Morales – Houston (to Everyone): 7:10 PM: Need to leave – I will Dr E your best and a bottle of Greek Olive Oil! Thanks for the great converstation as always.
John Antonucci–CT (to Everyone): 7:11 PM: gtg goodnight
George Rovder Arlington VA (Private): 7:11 PM: How much B6 daily Rick?
Richard Cramond, Oakton, VA (to Everyone): 7:15 PM: Good night
ALFRED LATIMER (to Everyone): 7:16 PM: Another informative meeting. Must go . Good night
Glenn -Minnesota (to Everyone): 7:22 PM: Thanks for the conversation and suggestions. Good night
Carlos Huerta (to Everyone): 7:32 PM: thanks for the input.
